Merry Christmas

Merry Christmas Everyone

I am currently sitting on an Amtrak train on the way to visit one of my brothers in New York City. On Saturday, he and I will head to northeastern Pennsylvania to visit our other brother and his family at their lake house. I plan to return to Fox Hill next Tuesday. Barbara has declined to accompany me in favor of working out some of the decorating issues at Fox Hill. She is happy to leave me with some "Brother Time".

I am just coming off of a "break week" during which I have felt particularly lively. There were several days when I was very tired - taking up to 4 hours of naps after getting a good 9 hours of sleep overnight. But still, this was only for a few days and when I was not sleeping, I was feeling quite lively and quite strong.

We went to Dana Farber yesterday to start Cycle 9. Each cycle is 21 days and you may have noticed that I try to update the blog after each doctor visit. After 9 cycles, I am finding that the reports do not differ very much. But I guess that in itself is news.

So, yesterday, the doctor told me that the numbers continue to come down, though relatively slowly. His goal is to get me to a stem cell transplant sometime in 2015 and he says that he likes to see the sort of slow steady progress that I have been showing. He says it tends to last longer.

You may recall that this is part of a clinical trial of a drug called Panobinostat. It is not yet approved, so I guess I am lucky to be part of the trial. Cycle 9 is using lower doses and fewer doses of some of the other drugsd than cycle 8 (which means only one trip to DFCI per week rather than 2 - Hooray - as long as it still works). The thing is that they give me a log form to fill out. And, the slots to fill in do not match the schedule of drugs they told me to take. One would think that this error would have been discovered by the other patients who are on cycle 9. Hey - wait a minute? Do you suppose that maybe there are no other patients on cycle 9 with this drug? Barbara tells me that I am jumping to conclusions and I suppose I am. Really I don't mind. It seems that the drugs are holding the cancer down and I continue to tolerate them, so why not?

Meanwhile, here I sit on the Amtrak. Interesting. It looks like it will be a half hour late getting into Penn Station. So far, the ride is reasonably comfortable, though I think I am getting bounced around more than I would in the bus. The Amtrak fare is close to $150. I think the bus costs $25 and is just as fast. But the Amtrak station in only 5 miles from Fox Hill.

Of course, this fare includes the $38 up-charge to travel business class. I am trying to figure out what I am getting for my $38. The conductor told me that I can get a complimentary beverage in the dining car. So, I picked up a $38 dollar bottle of cranberry juice. I would not have minded as much if I could have gotten a $38 half bottle of cheap wine, but apparently that is not on the menu. I am also entitled to a free copy of the NY Times - which I already read on-line this morning. Oh - and there is a couple more inches of leg room. That's it.

It is the first car on the train (after the engine). I guess that is good, but I can't help but wonder why this is an advantage. It is furthest from the dining car, though anyone who has ever eaten the Amtrak food might consider this another advantage. But, if something goes wrong, the first car is most vulnerable, right? The first few cars work as a kind of cushion for the cars as the end of the train as the whole thing collapses. Also, we have the longest walk from the terminals.

I think there are about 8 cars on this train and only one Business Class car. And the business class car is nearly empty. I wonder why.

The other thing is that Amtrak now offers free Wi-Fi. It doesn't actually connect to the internet most of the time and when it does, it is VERY slow. But it is Christmas and "it is the thought that counts". I wonder if the internet service in the the rest of the train is the same internet that doesn't work in Business Class.

Maybe I will travel coach class on the way home.

Another Day of Chemo

Yesterday, Barbara and I drove to Dana Farber for the start of Cycle 8 of my chemo regimen.

We had an early appointment - 7:15. When we arrived there, Barbara looked at the schedule and said,"We could actually get out of here early today." Big mistake. I gave her a dirty look and she realized immediately that she had jinxed us. Now, the truth is that as an engineer, I absolutely do NOT believe in jinxes or such like. In spite of knowing that they are totally meaningless, however, I have found them to be profoundly effective.

You may recall that last week, my phosphorous was too low to get treatment. So, over the last week, I took phosphorous pills and loaded up on foods that are high in phosphorous. And my phosphorous levels were plenty high enough. Someone suggested that I might be "phosphorescent" enough for them to use me at the top of a Christmas Tree. Nor did I burst into flame - even though besides taking phosphorous, I am also taking Magnesium. No - the problem had to to with Neutrophils which were way too low. It registered 0.77 where they require at least 1.00 to give me chemo.

Well, clearly this was bad new for the chemo, but I explained that this had happened before and that if I exercised, I could probably get the number to come up. So, I went to the stairway and managed to do 20 flights after which I submitted to yet another blood test. This got the number up to 0.93. To me this indicated that I was improving at the rate of .08 per flight and that all I really needed to do was to climb one or two more flights. The infusion nurses did not agree. They called the Clinical Study nurse. While waiting, I headed back to the stairway and told them to call me when the nurse showed up. I said that if I didn't answer the phone, to send someone to the stairwell with an Automatic Defibrillator. I managed another 17 flights before the nurse showed up. She decided I needed a shot in the arm - which she gave me (literally) and told me to wait two hours and get my blood drawn again. By this time I was too beat to do any more stairs, so I went outside and wandered around looking for lunch.  Which I found and brought back to Barbara.

They redid the blood test and this time it had nearly doubled - to 1.78, so I got my chemo. We finished everything at around 2:45.

One of these days, I am going to look up what Neutrophils are.

I wish I had cancer marker numbers from last week, but they are still not posted. I had hoped for additional numbers this week, but I am not not sure they are retesting.

Besides that, there is not much else to report over the last week. We are still getting settled in the Fox Down Abbey apartment. We had a "punch list meeting" this morning which went well. And I managed to make another small bowl.

Last Saturday, I bought a 5 foot tall Singing Santa which Barbara hates. It was not my fault because it was on sale. Barbara says it scares the daylights (well - not exactly "daylights", but you know what I mean) out of her every time she sees it. At first glance, it appears to be an intruder in a red suit. She says that it even scares the cats. They stand in front of it and meow. I think they want it to pet them.

There is a switch on it that will cause it to randomly (and loudly) sing Christmas Songs - yes - his lips do move. I am thinking of throwing the switch. This will get Barbara into the Holiday Spirit and prevent her from being surprised when she sees the Santa. It will also most likely get the two of us (me and Santa) thrown out of the house. 

Happy Thanksgiving everyone. We are enjoying the day in our new apartment at Fox Hill Village. Finally - Hooray! More about that later.

Yesterday, we went to Dana Farber - got there at 9:00 and left at 4:00 and did not get treatment. Apparently, the blood from the first lab draw had coagulated, so they had to redraw (which of course meant stabbing me again). When that result came back, my phosphorus was too low. I didn't even know that I HAD phosphorous. Anyway, they made me eat yogurt and drink milk and Coca Cola. Then they drew more blood and tested that - to find that the phosphorous level had not changed, so they kicked me out and told me to come back in a week.

What this means is that I will end up having two weeks of "break" instead of one week. It will be interesting to see what the numbers look like after this longer break. Meanwhile, the numbers we have so far from yesterday look pretty good - in that they are down slightly.

Here is what the graph looks like:

I have been feeling pretty good during this last cycle. Still tired, but not as tired as I had been. Foot bottoms are still pretty numb - and might be getting worse. They are doubling up on the drugs they are giving me to combat this. These drugs sometimes make me dizzy. Next maybe they will give me something for the dizziness. And that will probably cause some other side effect and then they will give me something else to combat that and so on. 

But enough about cancer and its treatment. I would rather talk about moving back into Fox Hill. We have been coming down here and staying in the guest suite when it is available. That has been a real pain; it felt like we were moving twice a week. Now that we have our own place, we can come and go as we want and we plan to have New Hampshire stuff and Massachusetts stuff - which means No More Moving.  The apartment came out very well and we are very happy with the result. The first thing I did was to set up my office and get the internet working. Barbara  has spent the last few days organizing her shoes. She also spent a little time on the kitchen. This has been taking a long time because, for reasons that I do not understand, every dish, pan, glass and item of silver has to be rewashed before it can be placed. Fortunately, we have the same kind of dishwasher that we have in New Hampshire, so we already know how to work it. We can't say the same for the other stuff. It took me 10 minutes to figure out how to heat water on the stove top. On Monday, we will call MIT to see if they offer courses on how to operate the washer and dryer.

Here are a couple of photos: 

My office:

The kitchen:

Since we will be seeing the doctors again next week, I will try to do another blog update then.  

Meanwhile, I am supposed to load up on stuff that is high in phosphorous.  I looked phosphorous up on Wikipedia and found that it will glow in the dark and that it is used for incendiary bombs and matches. Looks like I will be staying away from open flames for a while. 

Mystery Shirt

As you may have noticed, I try not to update the blog unless I have something to report. Normally, the updates are after a visit with a doctor, but this one is not, so there is noting very new on the medical front. I will say that I am still solidly on the plateau and the numbers that have come in since the last update confirm this. It would be good if they were dropping, but at least they are not going up.

The reason for this update is that I received a mystery gift in the mail about a week ago. It was a very humorous shirt which I really like. Unfortunately, there was no indication as to who it was who sent the gift. Here is a photo of the shirt being modeled by a particularly attractive male model:

So - I am guessing that whoever sent the shirt is a blog reader. To you, whoever you are, 'fess up if you want - or not if you wish to remain anonymous. Either way, know that I am enjoying the shirt.

Thank you.

Meanwhile, our renovation continues and seems to be on track for us to move back into our unit during Thanksgiving week. We are anxious to have our own place again. A friend slipped this cartoon under our door. I really feel like this guy:

Still on the plateau

As I write this, it is Saturday and we are currently at Fox Hill Village. I will be heading into Dana Farber this morning for another velcade injection and then back here. Later this afternoon we will be going on a gallery tour in Boston. I will thus be exposed to art. Perhaps this will be good for me.

Mostly, I am feeling OK, but I get tired very easily. Last week was "Break Week" during which we could stay in NH and I could work on my various projects - except that I was limited to what I could do in a day before I got really tired. I get out of breath and often need to sit for a while. Sometimes, I get very sleepy and I take frequent long naps.

I am still working on my "bowling". I managed to get four very large fresh oak logs, each being 20 inches in length and 20 inches in diameter. I cut them into reasonable bowl-sized pieces with the chain saw. Barbara thinks this sort of activity could contribute to my being tired.

The other thing is that the numbness in my feet gets worse every cycle. They now have me taking yet another pill to help with that. It seems to be working. I worry that these will create some other side-effect and then I will need another pill for that and so on. . .

I am just starting Cycle 7 of 8 cycles. According to the labs from Wednesday, I seem to still be on the plateau although one of the numbers is down a bit which is good. What they are hoping is that over time, the numbers will start to come down even more. Apparently this would not be unusual. They are still hoping to get the numbers down enough for me to have a Stem Cell Transplant.

I just learned that in December, I will go to a "Maintenance Mode". The difference will be that I will get Velcade and Dexamethasone only half as often - which is great because that means only one day per week at Dana Farber and thus no need to stay at Fox Hill for several days each week. In other words, just when we get to move into our renovated apartment here, we won't have to be here as much. Funny the way things work out. But there is a good chance that with winter approaching, we will choose to spend more time here "down south" in Massachusetts.

Speaking of which, the apartment has reached a point where we can see progress every time we drop by. The kitchen cabinets and counter tops are in and they look great. The washer, dryer and dishwasher have been delivered and are ready to install. They are painting the walls.

Entry Area

Kitchen

Barbara's Office Area off Kitcen

We have told the builders that we are moving back in on November 24. Does this mean that they will be done by then? I did not say that. What we have told them is that we are moving in on that day. It could be interesting. We just dropped by an hour or so ago and there were 5 guys working there, even though it is a Saturday. I think we have their attention.

Still, we drop by at least twice a day on days we are here at Fox Hill Village. For example, we visited late last night and again first thing this morning because, according to Barbara, "it will look different in daylight". Barbara loves visiting and seeing the progress. I think she is trying to plan her closet to maximize the number of shoes that she can fit. 

Bowling

We went to Dana Farber yesterday. Unfortunately, we had a 9:15 appointment, so we left Meredith at 6:30 giving us 2:45 for a normal drive of just over 2 hours. It took us 3:15 to get there. But once there the day went relatively quickly. Only a 20 minute wait for blood work and then almost no wait at all to see the doctors. We were out of there in record time for a "first day of cycle".

Meanwhile I have been feeling pretty good with minimal to normal side effects. I am very tired on some days meaning that all I want to do is to sleep. BUT - if I drink some caffeinated coffee and get up and start doing things, I seem to be able to have a pretty normal day. The other thing is that I sometimes get quite winded very easily - by walking up a flight of stairs or up an incline. Other times, this is not much of a problem. The third thing is that the bottoms of my feet feel pretty numb. This does not slow me down, but feels kind of weird. And then, finally, my muscles seem to be disappearing. I am getting skinny - except around my middle. The doctors say these are all normal side effects.

But if my body is tolerating the chemo fairly well, it seems that the cancer might also be building up a tolerance as well. There are three main numbers to be watching. From yesterday's blood test, one has been dead level for the last three cycles and one jumped last cycle, but was down nicely yesterday. We are still waiting for the results from the last (and most important) one. Doctors say that I might have reached a "plateau" but that there could be a delayed effect of the experimental drug and we could see more progress. At least (hopefully) things are not getting worse.

Meanwhile, I have been pursuing my "bowling". Not the kind of bowling where you get to wear the really cool "bowling shirts" and cool "bowling shoes". In fact, if you got to wear special shoes, Barbara would probably be into it more than I am. No - this is the kind of bowling where I make bowls on the lathe. I have this set up so that I can do it in either Meredith or FHV.

One issue is that my doctors say that I should not be breathing any dust. Bowling makes lots of dust, so I bought a special helmet that includes a face shield and a fan to blow filtered air across the shield. It works pretty well, except that Barbara says I look like one of those dogs who are forced to wear the "cone of shame" things so that they can't scratch themselves. So now, I feel humiliated. At least my bowl turning skills have improved a bit. I made two bowls today. One came out pretty good, but the other became by second "bottomless" bowl. Fortunately, I got enough good ideas from blog comments that I will be able to find uses for these.

Here are some "Bowling" photos:

Warren at the FHV Lathe

Wearing the "Cone of Shame"

Shoes

OK - OK - I get it.

Based on the feedback from yesterday's update, I have learned that what my faithful readers really care about is Barbara's new shoes.

So, therefore, by popular demand, Barbara agreed to model them for the camera. Here they are:

As much as I hate to admit it, they are really cool.